Wednesday, June 2, 2010

State of the Body

I figure that my 37th birthday is a good time to take inventory of the state of my body. It's gotten more complicated with accessories lately to compensate for damage done by the cancer (and friendly fire from the treatments).


Left shoulder


I've had a mediport since shortly after diagnosis in 2004 to make it easier to get chemotherapy. Instead of going through arm veins, I have a metal disc placed under the skin with a tube leading into the largest vein entering the heart. This saves the smaller arm veins from being burned by the drugs and simplifies the poking needed to get an IV line going.

Recently I upgraded to a two-disc port so that I can have two IV lines running at the same time without worrying about whether the drugs are compatible for a single line. The bottom line is now devoted to intravenous feeding. I have a small bowel obstruction that prevents food from completing its passage through my digestive system. So anything I try to eat comes back up, accompanied by terrible cramps and nausea. I lost forty pounds while we tried dietary changes to sneak something through the obstruction, but nothing helped. So since I can't eat anything, I'm not receiving total parenteral nutrition (TPN). Every night I get hooked up with a two-liter bag containing all the essential nutrients, and the contents are infused for twelve hours then disconnected in the morning.

The second mediport is being used for continuous infusion of 5-FU. My CEA is sky high again, so we started this chemotherapy to try shrinking whatever tumors are around and hopefully reopening my bowel to digestion. I've done well on 5-FU-based therapies in the past, so perhaps this will work well. I carry a portable pump that infuses the drug very slowly, twenty-four hours a day for four weeks in a row.

Belly

Since anything that enters my small bowel gets pushed back to the stomach for emesis, I had a gastrostomy tube installed to let those contents drain without the unpleasantness of vomiting. I can pop open the tube to let the stomach contents drain by gravity, or I can hook up a non-portable suction pump to pull out the contents and try to relieve cramps and nausea. It's been somewhat successful, but it can be painful, leaky, and an annoyance to care for.

Below the G-tube is my colostomy. I used to think that having an ostomy was a terrible burden in itself, but compared to my newer accessories it's actually fairly simple and habitual to care for. There's not much output of stool since my small bowel is blocked. It's mostly just fluid that the small bowel produces to try clearing the blockage. The biggest annoyance is managing my weekly wafer change with all the other tubes flopping around and tying me to various pumps.

Pelvis

After all the radiation I received, there's not much left working in the pelvis. I can barely feel by bladder, so I have to go to the bathroom regularly during the day to avoid leakage. When I'm sleeping I can't feel the urge at all, so I have to wear Depends pads to catch the leakage. Still, there are accidents when the pads aren't positioned just right or if I fall asleep before putting them on. So I have a big stockpile of pajama bottoms to change into whenever I have an accident.

The sexual function of my penis is pretty non-existent too. I haven't had an erection in months, and the last ones I had were with the help of Cialis. My libido is at zero right now too, probably due to the starvation that led me to needing the IV feedings. With all the tubes I have dangling from my body now, I don't think I could use an erection if I got one.

Summary

It takes a remarkable amount of work and technology to keep me alive and comfortable now. Actually I'm not very comfortable, still suffering from lots of abdominal cramps, nausea, and vomiting. We're trying various medications and drainage techniques to alleviate those. Oxycodone has been a friend to at least ease the pain. But the nausea and such is still too much to let me read, write, or drive comfortably.

I'm still processing the losses that these changes have brought. Being unable to eat is an enormous blow to a common source of happiness and a ubiquitous social activity. I imagine it's possible to live without eating, but it seems to be far from a normal existence and will be a challenge to accept. The mess of tubes and loss of penile function is a blow to any romantic interaction. And the burden of maintaining all these accessories and their functions is a drain on the limited energy I have left. My goal is to at least find fulfillment in work and intellectual activities. But at the moment those are beyond my capabilities.

14 comments:

brittanyjoy said...

You're so brave! This must be such a hard thing to live with and you do so well! Thankyou for taking the time to tell us about your experiences :)

Mary said...

You are an outstanding individual! I have been following your blog for months and have been eager to hear from you. It is good to have the update, although it is difficult to read your honest sharing of your ongoing battle with this relentless enemy.
Know that you are thought of daily with prayers for your comfort, serenity, and peace.
Mary

Rick Wagner said...

I just read your story due to a google serach on my name -- same as yours.

I am also a Taurus.

Small world.

What you are going through sucks big time but hang in there. I will be keeping an eye on your story.

The other Rick Wagner

Anonymous said...

Thanks for sharing your difficult journey. I hope you start feeling better soon.

Alena said...

Thank you for letting us know how you are doing. I check here regularly to see how you are... wish I could talk to you in person, keep you company, or whatever. As always, sending you love and good will from afar.

Anonymous said...

I wonder why the small bowel blockage cant be surgically removed?

alena said...

How are you? Thinking about you.

Rick Wagner said...

I just got home after a 12-day hospitalization for a blood infection. A couple weeks ago I developed a 105.4 degree fever and my blood pressure dropped to 70/40. So in I went to the emergency room and there I stayed while they diagnosed a fungal infection in the blood, treated me with IV antifungal drugs, removed my port (since it had become colonized by the bad guys), and finally installed a PICC line once my blood tests were clear for five days in a row.

Phew. Now (after a bit more healing and medicating) I can get back to fighting the cancer/obstruction. We did manage to get a few more CT scans done while I was in the hospital and it appears that my colon is unobstructed as well as most of my small intestine, so I'm sending the scans to my surgeon to consider bypassing the obstruction and letting me eat again.

Leeann said...

Hope you'll be eating again soon! Know that we are out here thinking of you, rooting for you, and being inspired by you.

Love,
Leeann & Peter

alena said...

Just letting you know that I continue to check in here to see how you are doing. I hope that your team has found ways to help you eat, be comfortable, and enjoy life a bit more.

I'm so glad that they were able to fight your infection! I can relate to the problems associated with low blood pressure, actually. I suffer from it myself and know how crappy it feels.

I wanted to ask you - I know that you've been drinking the ensure through your line, but have you looked into the bone broth and other alternative feeding supplements that I mentioned in a previous post? I really believe that they are extremely beneficial to your healing and more easily absorbed than synthetic or composite supplements.

Your stranger/friend, Alena

Anonymous said...

You are an amazingly tenaciuos individual. Thank you for sharing your thoughts and feelings it helps people understand situations a bit more. I recently aqcuired a colostomy and was looking for information and stumbled on your site. Thank you and keep up the fight.

Aldo

WeWee said...

Good luck Rick!

Mary said...

I have been checking in with your blog consistently while continuing to think of you often. You amaze me with the will and determination you have shown in batting this foe! Thank you for sharing your journey with us. My wish for you is for brighter, happier, healthier, more comfortable days ahead.

Anonymous said...

RIP, Rick Wagner. I was sad to find your obituary online. You seemed like a great guy.
<3